Make A Child Smile

Kendra's Story
written by mom Melva

When Kendra was born, she weighed 6 lb. 5.8oz and was 20 inches long. She seemed to be a healthy baby. She was almost always smiling and very happy. At five months old she could wave and say "bye bye" and say "Dada", I heard her say "Mom" when she was 7 months old. She would sit and hold her books and turn the pages, play with toys, all the normal things. She didn't crawl at first, she would only bottom scoot for a long time then she started crawling, at 14 months she began walking. Everything seemed normal.

Then things started to change, she stopped playing with toys and she could no longer hold her books and toys. She seemed to have no interest in them anymore. She started having repetitive hand movements, hand wringing, hand mouthing, which became constant while awake, she began to get upset and agitated. She could still walk, but unsteady at times. She stopped saying "Dada", "bye bye", and to this day I have only heard her say "Mom", one time.

Our family doctor referred us to Riley Children's Hospital in Indianapolis, Indiana. On December 17th 1999, Kendra was diagnosed with Rett Syndrome, a neurological disorder, seen almost exclusively in females. You can read more on the disorder on the web at www.rettsyndrome.org.

Kendra has Rett Syndrome, Asthma, Hyperventilation Apnea, Sleep Apnea, and slow head growth. She has to take breathing treatments daily, and has to use oxygen daily for her breathing problems. Kendra has to have sleep studies, because of her apnea. The last study showed that she stopped breathing 20 times during her sleep. Kendra had surgery to remove her enlarged tonsils and adenoids on May 3rd, 2000 at Riley Children's Hospital in Indianapolis, Indiana.

Kendra has to have regular feeding studies, because of her risk of aspiration. In October 2000, Kendra had surgery to have a G-tube put in, because she wasn't eating very well and couldn't gain any weight. She now weights 66lbs. but still doesn't eat by mouth very well.

We were told on August 2001, by her doctor, that Kendra will most likely stop walking, she is getting very stiff on her left side. Kendra has to be cared for at all times, she cannot do for herself, she has to be fed, bathed, dressed, etc..

February, 2001 Kendra started having seizures, she had an EEG done and it shows she is at high risk for seizures on both sides of her brain. She is now on 2 kinds of seizure medications for the seizures, and she has been seizure free for over 2 years now. Kendra has scoliosis and and we have x-rays every 4-6 months to check her curve, Doctor said she would most likely have to have surgery later.

Kendra is our little Rett Angel. There is no treatment or cure for Rett Syndrome.

Abilities:

See: Yes.
Hear: Yes.
Talk: No.
Walk: Yes but unsteady, cannot walk stairs by herself.
Read: No.
Use hands: Repetitive hand movements, will not hold anything for very long.

Siblings:
brother Kerry, age 35
sister Tammi, age 32

Child's Interests:
Kendra loves watching Barney & Dora videos, Planet's Funniest Animals videos, playing in the swimming pool and riding in a golf cart & four wheeler.

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